[John]

Early in my diagnosis I attended a forum in which my neurologist was a presenter. He described all care as being palliative. I guess this has been my mind set throughout. Maybe not the best if you are determined to keep going.

[John]

Hi Dagmar,

The pALS I know and know of cover most of the spectrum of humanity, not just vets or athletes. The only thing I will say is I don’t know of any young pALS. everyone is 50 +. I was diagnosed at 69.

Plattsburgh is on the shores of Lake Champlain which is not the pristine Lake everyone thinks of. Since the 1800′ coal barges plied the lake and left coal on the bottom at each offload. Plattsburgh was the biggest terminal. Just within the city was a coal gasification plant which operated on the Saranac River from 1896 to the mid 1960’s. Efforts at remediation of the site have been on going for over 10 yrs.  We were home to a SAC base through the entire cold war. Jet fuel was dumped over the lake often to lighten planes for landing. Solvents such as penetone were used for cleaning planes and parts of the airfield were declared a Super Fund site.  We have always had paper mills on the shore at Plattsburgh and Ticonderoga. Sewage treatment in Lake communities has gone from nonexistent to abysimal. Farming along the shores is putting more and more ag chemicals in the lake. Cyanobacteria blooms (HABS) are becoming constant. Research is being done at UVM Burlington and Dartmouth Hitchcock hospitals. I have given blood hair and nail samples for this work. A documentary was produced for VT PBS. U might find “The Lake Effect” on line.  On Facebook U might find ” Our Lake Our Lives” which includes cyanobacteria research by Dr. Stromal from Dartmouth.

I think all these diagnoses are accurate. Most are made by prominent neurologists at UVM Medical Center. Of course miss diagnosis is made at first by primary care Drs. I got rheumatoid arthritis and then spinal stenosis diagnosis before ALS. Barbara was first treated for Lyme disease.

I believe chambers of commerce stifle dissemination of adverse health so as not to discourage development.

One of my Drs stated that within a 90 mi radius of Plattsburgh, all neurological disease is above per capita expectation and ALS is off the charts.

 

 

[John]

Thank you Dagmar. I new you would be there as I begin dealing with yet another “new normal”.

[John]

Glad for the attention but I wonder if bundling ALS with all rare disease will help. Where I live ALS doesn’t seem so rare. I’m pretty sure I have lost more friends & aquaintences to ALS than cancer. For me, the realization began in 2012 (no idea in 2 yrs. I would get my diagnosis) with a local fundraiser “Raising Hope” begun in the name of a friend and local entrepreneur, Roger. He died in 2018, after which an event was held to raise more $ in his name. Black T shirts were displayed with the names of local victims and they were legion. Before me a good friend’s partner was diagnosed and has since passed, then a coworker, Richard. 2 yrs after me my neighbor (.8 MI away on my road), Norm, was diagnosed and survived only 1 yr. A friend of my wife is now diagnosed another of my coworkers’ sister, Barbara, is with hospice. I have heard of numerous others nearby. Last week, I had a cardiologist apt. as I have begun experienceing resting pulses in high 30’s to mid 40’s. I called to be sure I knew where to park and the easiest walk to the office explaining I had ALS. The receptionist immediately responded that her mother had recently been diagnosed. I could drone on but the point is for me ALS dosen’t seem rare.

[John]

Next month marks 5 yrs. Since diagnosis. As mentioned by others, I began to worry about speech months ago. My wife an some close friends, when asked, insisted there detected nothing. This past wknd we attend 2 large parties & I had to talk over loud music and other voices. I knew I was having trouble enunciating, particularly lisping. When we got home I asked my wife if she noticed. She tearfully replied “yes”. I plan to fight and try some or Dagmar’s technique. Hope I can keep being understood. Social interaction is the best part of life for me now.

[John]

Not sure if I have a problem yet. I have been diagnosed 5 yrs. Occasionally , I feel that I am slurring and having a slight lisp. My listeners say the do not hear it that way. I’ve had the concern for months on & off. The majority of the time I don’t detect problems. Did not see a speech pathologist at my last clinic. I want to be sure she is present next time. Each loss I experience is so slow and insidious. If I think I may be losing something it may not be obvious for 1 yr.

[John]

Just reviewed your blog. I have always had a slump which began with a rapid growth spurt at a young age.  I was becoming concerned about ALS creeping into my core. After testing at clinic I was assured “not yet”.

Two good things, I push my butt to the back of a chair when sitting andk get up often. I check my posture often and straighten up often, followed by sinking and reminding myself again.

I checked your blog and found many of your movements that I think I can do.

Note to self “try them”.

[John]

Yes.  I get Parkinson’s like shaking in my arms, hands and legs.  It is usually while straining to do something or reaching. The neurologist says it’s due to spasticity which I have a lot of.

[John]

A big thank you to Rick Jobus. I just printed the article Rick wrote today to keep for future reference.

I have no caregiver since my wife is in late stage Parkinson’s. So far I am handling my personal care but have been constantly concerned about the future thinking I would be paying a caregiver’s salary.  Medicare looks difficult but not impossible.

Thanks again for reducing my stress, Rick.

[John]

Just a quick comment on using trekking poles or 2 canes. When I became unsafe with canes, I got a pair of forearm (also called Canadian) crutches. These are much more stable. I still use 2 canes on & off because they are lighter & more handy but not near as safe.  My crutches are kind of clunky ones from a medical supply store but I meet a woman occasionally on my walking path who jogs using forearm crutches. Hers are carbon fiber and very light. I have been able to get around (slowly) on these for the last 3 yrs.

[John]

Read your latest workaround disaster and couldn’t help laughing hopefully with U not at U.  Pride goeth before a fall. I too am stubborn about appearances and have embarrassed myself mightily by trying a workaround that failed dismally in public. e.g. going to the men’s room by my self using my forearm crutches.  I’ll leave out details.

[John]

Thanks for your excellent advice. I too have been (am) extremely resistant. In the past I fell often. I would accept my punishment and get back up. Recently I found I could no longer get up. Humbling and frightening. I have no help. My wife is in late stage Parkinson’s and could only do 911. 2 EMTs came to grab an arm an put me on my feet. This happened again a week ago.

I did an online search and found a device called Indeelift. Looks like if U are unhurt, this will get U up easily. It is the size of an upright vacuum and can be rolled right over to U. If nearby, U can scootch over to it. I’m scheduled to see A PT about ways to get up and I plan to ask about an Indeelift.  Will post an update.

[John]

Betty Phillips,

Hi.  thank you for your reply on muscle relaxers. I think our experience is similar.

You are amazing for coping with this for 12+ yrs.  I was given mexilitine about 2 yrs ago because of unbearable cramping at night.  I take one 200mg cap at bedtime plus 5mg diazepam. I still cramp a little but just stretch my body in bed and go back to sleep. Very much an improvement.

Mexilitine is a heart drug and this is an off label use so you need to have an occasional EKG to make sure there is no adverse effect.

[John]

I recently returned from a visit to my ALS clinic.  It was again stressed that spasticity was the main cause of my total lack of balance and that muscle relaxers (which I do not like) were the only treatment.  Two things were suggested. The baclofen pump, which puts baclofen directly into spinal fluid, and botox injection into key muscle groups. I find both ideas scary.  I’m wondering if anyone in these forums has experience with or knowledge of these therapies.

[John]

Had my clinic visit last week and asked about AFOs. The reply was foot drop was not my problem. Spasticity was the cause of my almost total lack of balance, thus muscle relaxants (which I do not like) were the only choice.?  On a brighter note I did not loose ground in strength and respiratory functions.?

 

Note to Dagmar. As for your shoes, Mary Janes are always cute and appropriate no matter the size.?

[John]

Since my diagnosis I have eaten everything that can’t eat me first. I’ve always hunted and still eat venison. I have not experienced weight loss yet.

Not surprised Dagmar doesn’t go for supplements. I have followed the myriad suggestions and am currently gulping tumaric, resveritol, magnesium, zinc, B12, co Q 10, fish oil, & vit. D. Also have gagged on coconut oil off &on. I think I’m wasting time & $. I do think fats & oils are likely good. I use olive oil by also slather butter. Anyway, don’t think my arteries will get me at this point.

[John]

I recently bought a small power chair for myself.  I couldn’t face the monster my PT said insurance would want prescribed so I searched the web.  I came up with the Jazzy Air.  It cost $3800.  I found Mark’s Mobility in FL. they told me the chair had been redesigned to lower it 1 in. and give it a rise of 2 more in. but if the old design was OK I could have it for $2800.  They would set it up with the correct seat, assemble and test it put it on a truck and get it to me in northern NY free! I gave my Visa cd. and in 7 days had it. Right off the truck I got on the chair powered up and rode off, never needed a single adjustment.

I have very long practically useless legs. I can’t get on or off a scooter my chair goes up & down 10 in. at the touch of a button. I can reach high & low. I can also be at eye level in a conversation where others are standing. It turns 360 deg. in less than 30 “.  I love this thing. My worry is using it too muc and not keeping after my legs.

[John]

Any tips for coping with autocorrect? Just read my previous comment and it’s a bit incongruous.

[John]

Early in my diagnosis I requested a brace clinic. At the time I could walk unaided although my gait was spastic and “Frankenstein like”. The braces which were pulled from a shelf of try insurance did not seem to help.  I now use a rollator or forearm crutches and move at snail’s pace . I attend clinic tomorrow an will definitely revisit the AFO armed with your post, Dag Mar.

[John]

I’m impressed with the Volaris.

1. The only thing I would say is that it uses conventional looking wheels which limits the terrain U can handle.
2. I have found several “eurowalkers” that use bicycle wheels up to 12″ in diameter. The wheels required air and could be softened for sand. These walkers are expensive and heavy so U pay a big price.

[John]

I’m sorry you have to deal with ALS, Diana but you are off to a great start.

I remember hearing my diagnosis July of 2014. I rambled on about how diverse my activities were and how I intended to keep going. My neurologist at the time made one terse response ” Don’t get hurt you won’t recover”. I didn’t quit and 2 yrs. later I did get hurt, a badly fractured tibia and fibula. I remembered the Dr.’s words and did not want the plates and screws needed to get a proper repair. I was discouraged & ready to give up on my legs.  The surgeon called the neurologist I was seeing at clinic who called me and encouraged me get it fixed, go to rehab and continue to work to use my legs. The rehab people were amazing. I did recover and got back to walking on my forearm crutches as before.

I guess I wanted to tell my story but the point is you have to fight negative thoughts. As long as you keep trying, positive people will help.

I recently returned from a pilgrimage to FL which we have made every yr. since I was diagnosed. Obviously I was not the same as the previous year. I was painfully slow on my crutches and resorted to being pushed around in a wheelchair on our outings.  I came home feeling diminished and found myself not trying so hard to keep up. Then I began reading Dagmar’s column. I joined the forum and I’m recommited to working on myself. I know I can’t stop this but I have always felt better when pushing back.

Keep going, keep positive and seek out ideas like Dagmar’s to avoid getting stuck.

[John]

Thank you for the encouragement.  I’m feeling more positive about working on myself again.  There is so much out there that makes you feel excerciseing is futile.

[John]

Hi Dagmar,

I started working on my legs in bed as you suggested. I was doing this sort of excercise before and quit.  I was avid about fitness and always working to improve.  It is hard to keep at and get worse but I’m reenergised after reading of your success at chair squats and also that you are able to train for the breathing tests.

As you suggested I am pulling one leg at a time to my chest, then both. I can’t get my knees up using my legs. I have to grab at them and pull with my arms. My aductor ? muscles that pull the leg out are gone so when I hold both legs to my chest I can hardly separate my knees. I will keep trying.

[John]

Diana,

When I first was diagnosed I was very active, gym, bike, pool, running. I was an expert skier.  I ran through my routines for the Dr. expecting praise and encouragement. The reply was “don’t get hurt you won’t recover”.

I kept going enduring continuous decline. I did get hurt (broken ankle with a 12 week recovery) so I got discouraged. Now I do a little ROM & streaching. I don’t go on the floor as I can no longer get up. My legs only push away, I can’t draw them up to get them under me and get off the floor.

Not much encouragement from providers except for rom & stretching.

Dagmar is inspiring! I was so impressed that she could improve so much with chair squats. I plan to get out of my funk and try to put something to gether following her guidelines.